Food - Ups and Downs

A week after Wesley started eating Spaghetti-O's and other Chef Boyardee canned pastas, he decided that it was time to start refusing all baby food.  The problem with this was that he simply could not live on Chef Boyardee for three meals a day indefinitely.

We prayed that God would help Wesley start eating more table foods, and I prepared fruits and vegetables to bring to his next feeding therapy session.  Unfortunately, that therapy session was a complete disaster.  Wesley refused the steamed and mushy vegetables, the oatmeal, drinking out of an open cup, and even the apple sauce.  Needless to say, I left the therapy session very discouraged.  At subsequent therapy sessions, he also refused small pieces of banana and slices of american cheese.

Thankfully though, that is not the end of the story.  God has graciously answered our prayers for Wesley to start eating again, although not in the way that we had thought best.  Wesley has begun to eat his baby food again.  While it is disappointing to still be feeding him baby food, we are so very thankful that the Lord is continuing to faithfully provide for all of Wesley's needs.  Just as God cares for the birds of the air and the flowers of the field, so He also lovingly cares for Wesley, providing him with all the nutrition that he needs.

Wesley's feeding therapist has been working extra hard to help us introduce new foods to Wesley, but she added to our disappointment by explaining that with Wesley's low tone, difficulty chewing and new gag reflex, it will probably be a long time before he is able to eat fruits and vegetables.  It is much easier for him to eat overcooked or soft pastas and meats that only require one or two chews before swallowing.  Fruits and vegetables, on the other hand, require much more chewing before they are swallowed.  We have also learned that Wesley cannot tolerate foods that are sticky, such as mashed potatoes or hummus.  He has a very high palate, and as soon as his tongue pushes these foods up into his palate, he gags and throws up.

Despite these setbacks, Wesley has started to show an interest in more foods.  He will now eat quesadillas and guacamole.  He also regularly eats slices of thin crust pizza.  He even surprised us this weekend when he ate a slice of hand-tossed Pizza Hut pizza.  In the past he would have spit out the bread as soon as he realized it would require more work to eat, but this time he chewed it!  He also tolerates Cream of Wheat, as long as I mix it with a generous helping of apple sauce or other baby food fruits.  I do have to be careful of this, though, as I often watch his gag reflex start to kick in. On Monday at therapy he ate a few carrots and green beans from a can of minestrone soup (of course he also gagged and threw up when his therapist offered him a kidney bean).  We are praying that this will be the beginning of an introduction of vegetables for him.

Wesley continues to love his Chef Boyardee foods, now eating their Spaghetti-O's & meatballs, ravioli & meatballs, and mac & cheese.  He even permitted a variation when I made Kraft macaroni and cheese with soy milk (gross, I know!).

He seems to prefer salty and savory foods to sweet foods, which means he often refuses graham crackers or animal crackers, knowing that after a while I will give up and give him his veggie straws, pretzels, or goldfish.  He also now eats crackers with peanut butter on them, which have been an excellent source of fat and protein for him.

So despite our setbacks, we have been encouraged overall these past few weeks as we have watched God work in our little boy's life.  We continue to pray that he will accept more foods and more textures, but we rejoice at the strides that he is making.

Words (Plural!)

When Zach was two years old, my grandmother told me I should write down everything he said so that I wouldn't forget.  I remember thinking that it would be impossible to record every new thing that he did or said since at this point he already had a full vocabulary and added new words by the handful each day.  Looking back, it was such a joy to converse with him, but I never rejoiced at new words he spoke the way that I do with Wesley.

So, in keeping with my grandmother's wise words, I want to take a moment to write down and thank the Lord for the new words Wesley has started saying this week.

In the past week, Wesley's speech has exploded.  In addition to the words he was already saying ("all done", "Daddy", and "in"), he is now also saying "up", "down", "on", "off" and "bye".  He also is consistently signing "more", "all done", and "up".  And, he is starting to imitate us more too.  As he poked at my mom's face this weekend, she smiled at him, removed his hand, and jokingly said "enough".  Much to our surprise, he cheerfully looked back at her and said "anuff".

He is also imitating non-verbal sounds when we play games, such as "eee", raspberries, putting his lips together over and over again to make the "p" sound, saying "lalalala", and spitting with his lips closed (which is difficult for him to do with the low tone in his mouth).

The most exciting part of his new explosion of speech is that he seems to be adding words and signs without losing others.  In the past, every time he has added a word or a sign, he has lost all previous words and signs and just used the new ones.  So seeing him add words and signs while continuing to use his other words is a big step for him.  He is still having difficulty with motor planning, sometimes using the wrong sign until we remind him of the correct one, but the fact that he remembers the correct sign as we redirect him is wonderful.

His favorite thing to do is play games where he can use his signs and words over and over again.  He loves it when we turn the lights on and off for him.  As soon as we turn the lights on, he starts yelling "off" until we turn them off.  Then, the moment they turn off, he yells "on" with a big smile.  He could play this game forever.  We also play "up" and "down" with a parachute.  He throws his arms up in the air and says "up". Then, when we lift the parachute up, he throws his arms back down, saying "down".  He laughs and jumps around as we play these games, loving that he has the ability to tell us what he wants and that when he speaks things happen!

Of course, this post wouldn't be complete without sharing the bad news as well.  On Monday we had Wesley's hearing re-checked and it appears that the tube in his left ear is blocked and is starting to fall out.  There is also fluid in his left middle ear again.  So, we have started him on antibiotic drops and then will switch to a hydrogen peroxide solution in a few days in hopes that this will clear up the wax and the fluid.  Please pray that the fluid will drain and that surgery will not be needed to re-insert a tube in his left ear.  We will see Wesley's ENT again in a few weeks to see if the drops and solution helped or not.

Brothers

It would be no exaggeration to say that Wesley worships the ground that Zach walks on.  Wherever Zach goes, Wesley follows. Whatever Zach does, Wesley wants to do.  And whenever Zach invites Wesley to join him in an activity, Wesley is filled with excitement.  As Wesley follows in his brother's footsteps, it's pretty clear that he thinks Zach is the coolest big brother ever!

On the other hand, Zach has not always had this same affection toward his younger brother.  So it has been a joy for me to see recent changes in his heart toward Wesley.  Over the past two weeks I have had multiple opportunities to catch Zach's brotherly love in action.

For Christmas, Wesley's ST gave both boys kazoos (I know, the bane of my existence!), which they have LOVED!  At first Wesley didn't have any interest in them, but over time, as Zach played them with exuberance and joy for days on end, Wesley started to realize that these things really are tons of fun.  So he finally gave them a try.  Of course, he doesn't play the kazoo in the right spot, but thankfully it still works for him.  Now the boys regularly form their own little band, running through the house with Zach leading the way and Wesley following close behind.

Last week we had a free morning, and instead of running errands I decided to have family play/therapy time.  It was such a delight for me to watch as Zach excitedly explained everything to Wesley and cheerfully encouraged him at each step along the way.

Here Zach is helping Wesley sign "more" and say "go" while playing with Wesley's wind-up frog.

Wesley loved watching as Zach wound up his frog over and over and over again.

Then we worked on helping Wesley with his fine motor skills as he practiced putting coins into his piggy bank.  Zach was SO encouraging to his little brother.  He kept switching into his sweet, soft voice that he uses with Wesley and saying things like "good job Wesley" and "keep trying Wesley, you can do it".  In fact, with all of Zach's sweet encouragement, Wesley actually learned how to put the coins into the pig all by himself!  This is a HUGE accomplishment for him, as he still has a lot of difficulty with his fine motor skills and his pincer grasp.  And when he succeeded, Zach cheered and cheered for him!

An extra special moment occurred last Wednesday when I asked Zach to play with Wesley for a few minutes while I cleaned up before Wesley's DT arrived.  Zach got so excited and ran around collecting Wesley's favorite toys.  Then I heard him grab a few of Wesley's picture cards.  So I peeked around the corner to watch as he showed Wesley two picture cards and said, "Wesley, do you want your drum or your ball?  Yay, you picked your ball.  Great job Wesley.  Here you go, here's your ball!"  Then, he grabbed Wesley's Itsy Bitsy Spider picture card and said, "Wesley, do you want your drum or do you want Itsy Bitsy Spider?"  Of course, Wesley picked for Zach to sing to him, and thankfully I had the camera there to catch the song on video.

We learned early on that Wesley disliked cold foods, so ice cream and popsicles were out of the question.  But just last week Mike offered him a popsicle and Wesley loved it!  So this week when I gave Zach the last popsicle after lunch one day and then saw Wesley running toward him with his "I want some of that too" scream, I knew I was in big trouble.  But much to my surprise, instead I saw this:

It is such a joy to watch my boys playing together and loving each other!

Thank you Lord for blessing each of my boys with a brother!

Wesley's Life and God's Glory

After I wrote the post The Things I Can't Do Anything About, I received a question from a reader, asking if I ever feel like God's glory isn't enough to make up for these trials.  Do I ever feel like I would rather have Wesley happy and healthy and whole and not struggling than have God glorified?  Do I ever feel like God has enough glory and he doesn't need more?  God is glorious no matter what happens in our our lives, but Wesley only has this one life to live and why does it have to be so hard for him?  Why would God make a child miserable to bring himself glory?

In answering these questions, I first want to acknowledge that there is no easy, quick answer.  These are hard questions that have to be wrestled with.  In order to consider these questions rightly, I must first believe two things about God.

First, I must believe that God is good and that He is working all things together for my good (and for Wesley's good if he trusts in Him).  According to Romans 8:28, "And we know that for those who love God all things work together for good, for those who are called according to his purpose."  I recently read an excellent quote by R.C. Sproul on this verse that said,

"God, in his providence, has the power and the will to work all things together for good for his people. This does not mean that everything that happens to us is, in itself, good. Really bad things do happen to us. They are only proximately bad; they are never ultimately bad. That is, they are bad only in the short (proximate) term, never in the long term. Because of the triumph of God’s goodness in all things, he is able to bring good for us out of the bad. He turns our tragedies into supreme blessings."

 When I am tempted to question God's plan in creating Wesley with special needs, I can cling to the promise that while things will be more difficult for him and for us, God has promised to work this trial for our good.  He will turn the hardships that we have walked through and will continue to walk through into a supreme blessing!  And, when God works this trial for good in our lives, that is when He receives much glory.

Secondly, I must have an eternal perspective.  2 Corinthians 4:16-18 says, "So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day.  For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal."

It is true that here on earth Wesley only has this one life to live, and that in his lifetime he will face many difficulties and suffer much.  But, praise the Lord, even if he were to suffer every moment of his life here on earth, it is a light and momentary affliction in comparison to the eternal weight of glory beyond all comparison that is awaiting him in heaven.  What I see - a little boy with a chromosomal abnormality who will struggle in this life and never accomplish much in the world's eyes - is transient.  But what I don't see - heaven, where Wesley, in his new and perfect body, will forever worship and sing praise to his creator and savior - is eternal.

When my eyes are opened to the transience of this world and I long for the day when I will see my Savior face to face and worship him forever, God receives much glory.

So, while I wouldn't say that God has made Wesley miserable (you have only to meet my sweet little boy to see that he is filled with joy), I would say that by God creating Wesley with a chromosomal abnormality, He has already received much glory because of how He has worked this trial for good in our lives.  God has used this trial to make me increasingly thankful for my Savior, who has provided for my greatest need by sending His Son to pay the penalty for my sins.  He has used Wesley's medical challenges to remind me that while I am not in control, I can trust Him, for He is upholding Wesley's life.  And He has given me a greater longing for heaven, when all things will be made right, and when I will see Him face to face.

Therapy

WARNING:  This post is long!  I considered  breaking it into five shorter posts, but it seemed fitting that the long, labor intensive task of therapy be summarized in one long post.

One of our greatest blessings and most time consuming tasks since Wesley's birth has been therapy. Currently, Wesley has therapy five times a week, seeing a speech therapist, feeding therapist, physical therapist, occupational therapist, and developmental therapist. In addition, we work with him each day on the things the therapists have shown us in their sessions.

Most of our therapies are in the home, but in September we switched to a feeding therapist at Easter Seals. Although we drive 45 minutes each way to see Judy, we are so grateful for her help. Wesley has low tone in his mouth, a very weak jaw, a poor suck, and a disinterest in trying new foods. He also dislikes it when we put our hands on his face to provide jaw support. So, things that we're working on are chewing, helping him to move his tongue without also moving his jaw, drinking from a cup, getting used to having our hands under his jaw, and transitioning from baby food to table food.

Since we've only been seeing Judy for a few months now, we are excited to be seeing significant improvements.  With all her hard work, he has gone from drinking only out of his sippy cup, to drinking thickened liquids out of an open cup (Gerber 2nd peaches or applesauce), to learning how to drink rice milk and apple juice from an open cup.  He is letting us put our hands under his chin to support him as he drinks, which is amazing given how much he used to hate us touching his face.

He has also gone from not sucking well at all, to sucking Gogurt out of  container, to learning how to suck from a straw.  He still has a long way to go with straw drinking, but with Judy's persistence she's helping him learn to keep his tongue in his mouth, put his lips around the straw, and strengthen his suck.

As I shared here, after eating Spaghetti-O's in therapy sessions in December, he also started eating them for us at home last week! This is a huge step for him.  We would love your prayers that Wesley would continue to allow Judy and I to introduce him to new foods and textures and help him with jaw support. In the past, this has been the area of therapy where he has fought us the most.

Wesley's other therapy sessions are usually much more enjoyable. Wesley loves his physical therapist, Becky. Because of his sensory issues, Wesley always wants to be moving. So, working with him on rolling, scooting, crawling, and walking has been fairly easy. On the other hand, Becky is always trying to find ways to work on stability with him. (He's usually not a big fan of stability exercises!) Because he over pronates and walks with his ankles turned out, Becky recommended that we get Sure Step orthotics for him. They have made such a big difference!  His balance has significantly improved with the orthotics, although he still does fall regularly.

Right now our big goals for Wesley are to teach him how to balance on one foot, play in a squatting position without falling over, stand up by himself without support, walk up the stairs with support, and crawl down the stairs by himself.

Becky has found such enjoyable ways for us to practice these things.  We play with his launch rocket, helping him to balance on one foot while he lifts his other foot to stomp on the launcher.  We also lay out a board and have him practice stepping over it - he thinks it's so funny to go back and forth, back and forth, and I love watching his concentrated expressions as he carefully lifts one leg over the board while using us or a chair for balance.  And of course, we regularly practice going up and down the stairs, which Wesley thinks is such a fun game!  He comes running every time he even hears the word "stairs" mentioned.

Christi used to be Wesley's speech and feeding therapist in the home, but recently switched to just providing speech therapy. That has made such a big difference.  Now Wesley looks forward to seeing her and enjoys their sessions rather than watching her with dread while waiting to see whether it will be a speech or feeding session.

Christi has done a fantastic job of helping us to teach Wesley to communicate, despite his lack of interest in speaking or signing. With her help we have created a picture board with pictures of his favorite toys, along with his sippy cup and several foods he eats. Now when we give him a choice of two different cards he is able to let us know which toy/food he wants.  He loves being able to communicate with us and always has a big smile on his face as he hands us his preferred card.

She also works with him on saying and signing "more" and "all done" along with playing games with him in hopes of helping him to start saying more consonants and words.  We play with bubbles while saying "pop, pop, pop"; we wind up wind-up toys and say "ready, set...." and wait for him to make an attempt at saying "go"; we play with farm animals, working on animal names and sounds they make; we put balls into a popper and say "in"; etc....  So far Wesley's only consistent words are "daddy" and "in", but we have heard him say "mama" a few times and "bubble" once.  So, we will keep working.

He still seems to have a disconnect, where he doesn't realize that he can use his mouth and hands to vocalize and communicate.  So, we would love your prayers that Wesley would understand the power of speech and start attempting to communicate with us.

Wesley's old occupational therapist, Donna, was a spectacular resource for us.  Her expertise and years of experience were such a blessing to us as she has helped us in so many areas.  Before we started seeing Judy, Donna helped us teach Wesley how to close his lips over his spoon rather than keeping his tongue out as we fed him baby food.  She also taught him how to hold his bottle by himself and how to drink out of a sippy cup.  For those things alone, we can never thank her enough!

Another thing Donna noticed was that Wesley's constant need for motion seemed to be a sensory issue.  So, she recommended a SPIO vest to provide him with proprioceptive input.  What a difference that has made!  While he still walks and runs around the house constantly, the vest has calmed him down significantly.  He is now able to sit still for longer periods of time and concentrate on other things rather than just his need for motion.  Since getting the vest, we have seen him make great strides in fine motor skills, feeding, and speech now that he is able to focus better.

Right now, the biggest things we are working on with Wesley are putting shapes into his shape sorter and coins into his piggy bank, working on the concepts of in & out and up & down, and learning to use his pointer and his pincer grasp on a consistent basis.

Wesley's newest therapist is Kiya, who provides him with developmental therapy.  Wesley ADORES Kiya.  The moment she arrives, he runs behind me and stands behind me while peeking around my legs to smile at her and giggle.  As she says hi to him, he starts laughing and will just laugh and laugh with her. Sometimes it is hard for her to get him to participate in activities, because all he wants to do is flirt with her and enjoy her presence.  It is such a joy for me to see the bond they have formed and watch the fun that they have together.

Kiya works with Wesley to help him grow developmentally in how he plays and interacts with others.  Right now our goals are to help him grow in participating in non-preferred activities rather than throwing temper tantrums.  As well, we're working on helping him learn to follow commands (which we - especially Zach - hope will help with learning to share too!),  learn how to imitate us, use his eyes and his hands together when interacting with people and toys rather than looking off elsewhere, and begin to communicate more (whether that be with signs, picture cards, verbal imitation, or words).

Kiya uses a lot of the same activities that we use for occupational therapy and speech therapy, seeking to incorporate the language, fine motor skills, and appropriate play skills all together into the activities we do.

We are so thankful for all of our therapists and for the ways they help us.  God has very clearly hand picked the perfect ladies to help Wesley to learn to the best of his abilities.  They have become a part of our family, and we will miss them greatly when Wesley ages out of Early Intervention.

School

After much anticipation, today was Zach's first day of preschool. He was so excited that he couldn't wait to get up this morning... literally!  He had his clothes all set out last night and was up and getting ready before 7 a.m.  (Normally we encourage him to stay in bed until 7, but today was a special occasion.)

On the way out the door, his smile was a mile wide as we grabbed his Lightning McQueen backpack and his lunch box.  He also made sure to bring the picture he colored for his teacher and the homemade envelope he had taped together to put it in.

Upon arriving at school, he was excited to find a coat hook especially for him.  It even had his name above it.  He proudly hung his coat up and then did a little dance in the hallway as I talked with his teacher.  She was so welcoming to Zach, and within two minutes she had him talking her ear off.

When I arrived to pick him up, I saw him laughing with the other boys at the lunch room table.  Then, when he saw me, his whole face brightened up.  He couldn't wait to finish lunch and show me the activities he had completed and the treat his teacher left in his cubby for him.

I thoroughly enjoyed listening to him this afternoon as he explained in great detail the instructions his teacher gave him for each activity and how he followed them.  He took the time to show me how on one of his papers he wrote his own name, because he told his teacher she didn't need to write it for him since he could write it himself.  Pacing back and forth in the kitchen, he spoke animatedly about the toys he played with and the  conversations he had with other kids in his class.

It was such a joy for me to watch my son have an amazing first day at school.  Thank you Lord for providing Zach with such a wonderful teacher and class.

Much Given...Much Required

Dear Zach,

When I watch your little mind at work, I am in awe.  The questions you ask and the vocabulary you use are constantly reflecting depth of the thoughts running through your little head.  When you use words like "ubiquitous" or "occupied" correctly in a sentence, my jaw drops.  Often, instead of answering your questions, I am asking you, "Where did you learn that?".  The other day, you informed me that you could count to 100.  Believing that you would count to 20 and then get stuck, I asked you to show me.  And you did!

You are reading so well, and you often pick out words that you can read when I am reading books or the Bible to you.  Then today, when I picked you up from Sunday School, I looked down at the picture you colored and my eyes went wide.  You didn't color very much, but your name was clearly written across the top of the picture, and not in your teacher's handwriting.  I asked you if your teacher had helped you write your name, and you said no.  You informed me that you told your teacher you could write your name all by yourself - and then you did it!

But Zach, when I see the mind that the Lord has blessed you with, I am reminded of the words that Jesus spoke in Luke 12:48.  "From everyone who has been given much, much will be required; and from the one who has been entrusted much, much more will be asked."  Zach, I don't know why the Lord gave you the mind that he gave you while giving Wesley the mind that He gave him.  But I do know that the Lord has given you much, and as one to whom the Lord has entrusted much, much will be required of you.

When I look at you and Wesley together, I often smile as I see God's wisdom in giving Wesley to you as a brother.  I pray that growing up with him, helping him, loving him, and seeing how hard it is for him to learn things will humble you.  I pray that God will use the difficulties that Wesley experiences to help you realize that everything you have is a GIFT from God.  I pray that you will never grow proud because of what you accomplish, but that you will thank God, knowing that He is the giver of all good gifts.

I pray for you each day, that you will trust in Jesus as your Savior and that you will love the Lord your God with all your heart, with all your soul, with all your mind, and with all your strength.  My heart will rejoice if one day I can say, "This is my son Zach, a man after God's own heart."  God has given you much Zach, and if you love your Savior and seek to follow Him all of your days, then you can use the gifts that He has given you to further His kingdom and to bring Him much glory.

Zach, I can already see that the task ahead of Daddy and I will be difficult as we seek to teach you and model for you humility and a love for our Savior.  But, I also rejoice as I see the Lord already at work in your heart, drawing you to Himself.

Love,

Mom